I have found a nonprofit film corporation that supports directors who shoot documentaries. They helped Steven James develop "Hoop Dreams" and later "Stevie."

There name is Kartemquin films. Here is their mission statement:

Kartemquin Films is a home for independent filmmakers developing documentary as a vehicle to deepen our understanding of society through everyday human drama. Focusing on people whose lives are most directly affected by social and political change and who are often overlooked or misrepresented by the media, Kartemquin’s films open up a dialogue, both in communities and between the general public and policymakers.

Kartemquin documentaries are supported by civic engagement strategies that are developed with local and national partners to foster understanding, change thinking, and build support for social change. As a locally and nationally-recognized media arts organization, Kartemquin acts as a trusted bridge between communities and the media, fosters the growth of emerging filmmaking voices passionate about social issues and media policy, and encourages staff and stakeholders to play a role in advocating for a strong public media.

Here is their website. http://www.kartemquin.com/

I want to contact them to see if they have an interest in our project. I have composed an email, and I am wondering what you all think about contacting them and the email, pasted below:

Dear Kartemquin Films,

I have a rare muscle disease known as Myotonia Congenita, which affects the muscles ability to stop contracting once they start.
As you can imagine this creates some interesting situations. I also represent a group of individuals around the world who have
this condition, and we are searching for a documentary team that can effectively handle our story.

In our media starved culture, where everyone is focused on image and success, our story is symbolic of the alternative way of living where one is rewarded for being true to who they really no matter how difficult the circumstances.

While everyone is rewarded for being true to themselves, the details of how we are viewed by society is both unique and poignant.

Here are three reasons why:

1. Once our muscles are warmed up the stiffness caused by the contractions greatly lessens. Therefore, the majority of people
with Myotonia hide it from friends, family, etc., but not without a considerable amount of physical, mental and emotional effort.

We keep our muscles warmed up by constantly doing isometric exercises. We tend to be great actors as come up with many reasons why we are rendered immoble while doing a variety of tasks (ie, walking up steps, or shaking someone's hand). We are also in constant anticipation of the next time we need to be warmed up (a teacher calling us up to the front of class in school or a situation where we could get knocked over).

2. The reason why people hide the disease is because they are often accused of being lazy, on drugs or trying to get attention.
This is exacerbated by the fact that the symptoms appear to be very inconsistent. No matter how hard one tries, in certain
situations no amount of pre warm up activities can deter the muscles in the body from locking up and rendering the person
immobile. (Walking up steps, getting out of chairs or losing one’s balance are common culprits of this immobility).

3. Not hiding the muscle disease creates and requires an immense amount of internal strength. Not only do we deal with embarrassing
situations, but we also deal with people’s judgments about what they think is wrong with us.

People say “just be yourself and you will be happy,” but how many people actually do this. Because it is so physically and emotionally taxing to hide the muscle disease, doing so makes life barely worth living. And this is where the story gets interesting.

There is an animal known as the fainting goat whose entire breed have Mytonia Congenita(http://en.wikipedia.org/wiki/Fainting_goat). Unlike people they are obviously unaware of what anyone thinks of them, so they continually run, stiffen up and then fall over. Just as people with Myotonia can show others the rewards (courage, strength and endurance) of just being yourself, the goats can serve as models to people with Myotonia on how to live one’s life and deal with one’s challenges in an honest way. “Be like a goat. Don’t worry if you fall—you can always get back up again.”

The film would end of course with people with Myotonia and fainting goats running, falling and getting back up again.

The condition is covered under the Muscular Dystrophy Associations list of diseases, which is one possible source for funding.

At this point we have developed an outline of the film, which we will share if you are interested in producing and directing the documentary.

Jim,
I love what you are trying to do. Thanks so much for all your effort on behalf of those with Myotonia Congentia. What you might want to add is that the over developed muscles can cause parents with young Thomsen Disease children severe consequences. We had a doctor when my son was only about 4 or 5 that we went to so we can find help about what was going on with our child tell us that he was going to report us to the state for allowing our child to pump weights. Imagine that. My son had these muscles that we had no clue where they were coming from and a doctor was going to report us to the state for child abuse.

Wow, mcboarder - That is pretty outrageous! And it's the exact opposite of my situation when I was a kid - how things have changed. Now, any anomaly in a child is immediately cause for suspicion about the parents. When I was a very little girl, and my muscles were pretty enormous, people used to stop my mom on the street, to ask if I was a dancer... and the doctor noticed nothing unusual about me at all!! Good grief! : ) Lois

I was exited when I saw in Quest that you were looking at doing a documentary. There is so much information that is not correct on the disease. It is frustrating at the way you can be treated by health care proffessionals at times.

I look forward to hearing about the progress of this journey you are looking to embark on. Thank you.

Hi Kristie - Be sure to post what state or country you are from, so if it isn't already on the list, it can be added... we want to know how many places this forum reaches! The documentary project is so exciting - Jim is biting off A LOT!!! lois

Jim I think this is great! One of the most frustrating things about this disease is all the efforts to hide it or when we reveal it then we are misunderstood. This has been bottled up inside us for too long...it is time to feel understood or at least feel like there are efforts made toward this. Awesome!!